Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Too Soon

on June 12, 2012

Every day that passes brings us one day closer to Joscelyn’s hemispherectomy surgery.

I’m grateful for modern medicine, grateful to Dr. Benjamin Carson for pioneering this procedure and giving our daughter hope for a normal life, grateful for the success stories that other hemi-parents have shared with me about how their children are thriving post-surgery.

I know that this procedure, as drastic as it is, is the best thing for Joss- and I’m eager to have it over with and to get her started on the long road to recovery…

but I’m also dreading it.

We’re told that the surgery will take 8-14 hours. The doctors have promised to give us regular updates, and my wonderfully supportive Mother-in-Love will be there to give us breaks so we can grab a bite to eat, walk outside, visit the Chapel or try to nap.

In my head, I know that we’ll get through the surgery just fine.

But I can’t help but think that it’s just too soon;

It’s too soon to be there again, sitting helpless in a hospital waiting room, anticipating word of my child’s fate.

It’s too soon since I last did this;

Too soon since the nurses and the orderlies with their blue scrubs and fake smiles escorted me back into a tiny room smelling of antiseptic and the fear of hundreds of parents before me;

Too soon to be trapped there again as I was just six months ago,

when the seconds turned into minutes and the minutes felt like hours until finally,

finally,

the doctor came in and with face grave and voice heavy with resignation, issued his practiced apology and assured me that though they had done all that they could do, they were sorry,

so terribly sorry,

but my son was dead.

It’s too soon.

Never again would be too soon.

But it doesn’t matter. The surgery WILL take place in a matter of weeks and of course, I WILL be there for my little girl because I cannot be anywhere else.

This morning, a fellow hemi-mama from California sent me this link:

Julie and her husband took the time to film it specifically for the benefit of newly diagnosed families such as ours. It was shot at one of the “Family Reunions” that take place every year courtesy of the Hemispherectomy Foundation. At these reunions, parents who have chosen the hemispherectomy procedure for their children can meet, compare notes, let their children meet other hemi-kids just like them and at least for a time, not feel so different from everyone else in the world.

I’m still scared.

But at least I know I’m not alone.

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18 responses to “Too Soon

  1. Steph says:

    Too soon, indeed. My heart is heavy with this burden you must carry. I commit to bearing up under it with you as do so many others. May the weight of it be evenly carried by all and help make yours lighter, somehow…some way…some merciful, grace filled way.

  2. Jill Windham says:

    Jenn- we’ve never met, but are facebook friends. Debbie is a friend of mine. You are in my daily thoughts and I can’t wait to see what God does in this situation for your girl!!! xoxox

  3. Carman Cullen-Batt says:

    It is all in God’s time and you are held tight in his grace and love as is Joss

  4. Marlene Buchel says:

    Jennifer – thanks for including the videos – your new HEMI family is awe inspiring!

  5. Buddenhagen says:

    It takes a village Jen. Looks like you have one and Gary and I are in it. Forever friend!

  6. Norma Ruttan says:

    How exhausted you must get even anticipating this phenomenal surgery for your sweetheart Joscelyn. Know that I am praying daily for Joss and her surgeons. I hope that it helps knowing that.

  7. I plan to spend that whole day in silent meditation. We will also certainly be at the hospital whenever you need us to be there. I walk boldly with you into the heart of fear. One day this fear will be transcended. This pain will be a memory. But not yet. Not yet. Not in this fragile world. I refuse to turn away from it as you walk through the fire. Know you and Michael are not alone.

    • Thank you, my sweet friend! I DO know that!! We are SO grateful to have so many standing in the gap for us; to carry us when our own strength fails. Every milestone met and every achievement attained in our precious little girl’s life will be SUCH cause for rejoicing; mini-miracles! These are dark times indeed but there is light and hope and rejoicing just over the horizon. Thank you for watching with us for those first auspicious rays! Much love!

  8. Erica Walker says:

    I remember these emotions all too well. It was just 6 months ago that I endured the same thoughts and pains. Before you know it, it will be over with and little Joss will be on the road to recovery! I can’t wait to see how well she does! Much hemi love!

  9. eastlakecounty says:

    Is Dr. Trumble your surgeon? Please let your mother-in-love know that I’m available to run errands for her as she supports your family. I will private message you my number when I get home; PLEASE take advantage of me being at the hospital. My entire team is praying for Joss, for you, your family and your medical team. (Pam Jennelle)

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